Tag: life

I try to write my blog posts well in advance of Monday morning…but, sometimes, I don’t have any creative and/or meaningful subjects to write about. The product of such a dry spell is something like this post:

I’m writing this entry on the afternoon of Friday, February 8th, 2019. I usually don’t write this late in the day; in fact, it feels a bit strange to be doing so. I am at the kitchen table, in my usual spot, facing the window. It’s one of those rare winter days in which the sun is actually shining…but it’s also lightly snowing.

Starting from where I left off yesterday, it’s now a brand-new morning—with no sign of snow. The sun has begun its ascent, and the dark sky is turning cotton-candy pink. There are already birds diving into the cedars. It was windy yesterday, but today the wind is fierce, cold. I imagine, as the house creaks in resistance, that this is the wolf of the fairy tales (see The Three Little Pigs). The windchimes, hanging on the front porch are singing. It’s not their usual melody; today’s song is unnerving in its pace.

Luna is at the point in her puppyhood wherein she doesn’t like the wind anymore. She’ll snore on the couch, the wind will blow, and she’ll get up to howl at the back door. These are the moments when her mother’s bloodline—coonhound—shows. I look at her, when she uses this grown-up voice, and I can’t help but wonder where our puppy went.

I don’t know what Alderaan’s thoughts are regarding the wind. He divides his time between his bed and the mantle. When he stretches out atop the mantle, it is clear that he believes he’s the king of this house. I’m not going to tell him otherwise.

But I will tell YOU this—

My fledgling immune system kicked viral %*&.

I bounced back from the viral cold faster than my fiancé did. Apparently, my new immune system is light-years ahead of my old one. In the past, prior to my bone marrow transplant, my fiancé would have a cold for two days; I would have the samecold for two weeks. Although I still have a few lingering symptoms, I am pleased with my immune system’s performance. It gives me hope; if Acute Lymphoblastic Leukemia ever tries to develop again, my new immune system will certainly recognize it as a threat. It will destroy the malfunctioning cells, before they have a chance to become a problem.

With all of that said, my new immune system is still growing—I will be receiving additional pediatric vaccinations in the near future—but, already, it’s proving itself to be dependable, capable.

I’m certain that my transplant team will be happy to hear this.

I will be sharing this news with the team later this week. Please pray for safe travels and good news. Thank you, Dear Readers, for all of the prayers, love, and light that you regularly send my way. I am so, so grateful for each of you.

Well, Dear Readers, I am feeling the need to do another free-write. Will any of the following make sense? I don’t know. I guess we’ll find out, together, at the end of this post.

There is a colony of rabbits (also known as, “The Colony” & “The Colonists”) that live in the cedar hedge surrounding our house. Some of The Colonists may also have a den underneath our porch. Everyday, when I go outside to retrieve the mail, I see their paw-prints in the snow. I see Mega-bunny’s tracks, and the junior-bunnies’ tracks. Their paw-prints weave between naked shrubs, and then disappear into the gaps in the porch’s lattice work.

And, then, I see cat tracks.

There are two neighborhood cats that occasionally visit us. I have decided to call them Sneaky Pete (he prowls the field across the road) and Tux (because he is a big, handsome, tuxedo-colored cat).

The paw-prints in the snow seem to indicate that they’ve both come calling recently.

Sneaky Pete’s paw-prints are much smaller than Tux’s, and he doesn’t seem to linger. He approaches the porch, turns around, and then follows the length of the driveway. He must cross the road there, to return home to his field and to the farmhouse beside it.

Tux’s prints, however, seem to document a calculated stride. He’s hunting, which disappoints me, because I have a soft spot for The Colony.

The rabbits and the cats aren’t the only creatures telling stories in the snow. The squirrel—the crazy one that prefers to climb the garage’s façade sideways—left tracks along the roof. They melted away when the sun emerged.

Her hound nose also leads her to the porch’s lattice work and to the edge of the cedars.

I haven’t spotted any tracks or abandoned feathers, but the cedars are alive with the plaintive cries of blue jays. I have observed one, scarlet-feathered cardinal. A murder of crows sometimes flies overhead. Sporadically, a flock of mourning doves visit.

A spectator to all of these stories, is a cold, but wondrous, winter moon:

Well, what do you think? Do all of these little tales add up to something larger? Is winter a hunter, like Tux? Or, is it serene, like the moon? Can it be both?

Both of our sidewalks—and our driveway—are currently miniature ice rinks.

They’re slick, slippery, and challenging to walk on. I’ve nearly wiped out on four separate occasions. Due to this, I’ve decided to be a bit more cautious and use a ski pole to help me get to where I need to go. It’s slow-going, but to quote a popular adage, “it’s better to be safe, then sorry”.

I imagine, that those of you who live near us, are experiencing similar conditions.

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When I look outside at this ice—especially the large patch next to the garage door—it summons memories of winters past.

Underneath that dusting of snow, is ice

There were several winters in which my father made a shallow ice rink in the side-yard. My brother and I were still in grade school at the time—and huge fans of “The Mighty Ducks”.

The goal—the reason for creating an ice rink—was to teach us how to skate.

Our parents bought us hockey skates, because they have better ankle support. They were black with white laces. The blades glimmered, new. Our father used to play hockey in high school, and later, in a men’s league, so we’d don his old helmets. He’d skate with us, keeping an eye on us as we pushed chairs across the ice.

I will admit to not being good at it. In fact, I’ll go as far as to say that I can’t skate.

Why? How could such a thing happen when I had the best skating coach that a little girl could possibly ask for?

I was afraid of falling. Because of this fear, my body would tense up, rigid. I seem to recall that my knees should have been slightly bent, a bit relaxed, even. I couldn’t do that. Relaxing, to me, meant giving up control.

Control is believed to be power; but, it’s a complete myth. We’re never 100% in control of our lives. Sure, we can have a direct impact on how our lives unfold via the choices we make (to pursue an education, to apply for a particular job, to eat healthy foods and exercise). We can control what lens we use to view the world. Viewing the world through a positive lens can make life feel and look better; conversely, viewing it through a negative lens, can make it quite awful.

I, obviously, didn’t know any of this when I was a little girl on that ice rink. I remained tense, hoping to keep every ounce of control that I thought I had. There are consequences for not relaxing. In the adult world, it’s called, “burn-out”. As a little girl in skates, it was a missed opportunity.

Learning how to relax—giving my mind and my body a break from stress—is now at the top of my priority list. It encourages healing (which I have plenty to still do). I don’t need to control everything about my life; “burn-out” and “missed opportunities” are too steep a price to pay. As another adage reminds me, it’s important to, “stop and smell the roses”. Relax, slow down enough to notice the little things in life—which, more often than not, are the most beautiful things.

Will I ever wear a pair of skates again? I don’t know. Maybe. We’ll see.

Those of you who have followed this blog since it’s inception, know that I often write about medical appointments and/or health developments. Some of those posts were difficult to write. Living through those events was, at times, quite frightening. Today, though, I’d like to share a light-hearted fear—something that can be laughed at.

Some pertinent background information:

I am not a gamer, but my fiancé is. It’s through his interest in gaming that I was introduced to Rust.

Rust is an online, multi-player video game. It is set in a post-apocalyptic world, in which survival is neither easy nor guaranteed. In Rust, players must scavenge for food, weapons, and clothing. Players make their own outfits from the various materials that they find (i.e. wooden barrels, metal buckets). Occasionally, players discover hazmat suits—which are helpful in high-radiation zones. It is the end of the world, after all.

So, what does any of this have to do with me? It has come to my attention that every time I carry a letter out to the mailbox—in the wee hours of the morning—I am dressed like a character from Rust. My outfit does not adhere to any fashion standards…it’s just a quick ensemble, pieced together to survive the cold.

My coat is respectable enough, but the pajama pants that I wear with it, vary from silky black material, to Christmas-themed, to gray with pink, dark gray, and white polka-dots.

I wear snow boots.

This ensemble is topped off with a Star Wars hat:

Every time I open that front door, I pray for three things:

Dear God, please keep Alderaan (our cat) upstairs where he is safe. Dear God, you know my heart will shatter if he sneaks outside and becomes a road pancake.

Dear God, please do not let me fall.

Dear God, please don’t let anyone take a picture of me.

The road we live on is well-traveled, and I am afraid that one of these days, a commuter is going to snap a picture of me with their cellphone. I’m dressed so ridiculously in the morning, that I feel as though the picture would go viral—especially if it’s marketed creatively:

Woman believes she lives in Rust.

Woman dressed to scavenge, bust geodes, and build her base.

Woman in Rust wears a surgical mask—it’s the end of the world!

Clearly, my marketing skills are a bit rusty. Pun intended.

I’m not actually afraid of having my picture taken; in fact, I find this “fear” to be rather amusing. It is so insignificant compared to other fears that have plagued me in the past! And, sometimes, it just feels good to laugh at the workings of my own imagination.

We’re only fourteen days into 2019, and, already, the new year has taught me some significant lessons.

While undecorating the Christmas tree, an angel ornament broke.

The dryer is screeching…not a little bit, but a lot.

I broke a tooth.

How can I be “okay” with any of these happenings? The answer is quite simple: most broken things can be fixed. With, perhaps, the exception of these ink-stained pajama pants:

There’s no saving these, but that, too, is okay. I only ever wear them to bed. And, if you look closer, what do those ink stains look like? Hearts. They look like hearts.

I was not happy about the angel ornament breaking. This ornament was actually a party favor from a friend’s wedding (forever ago). The angel has shown me, that although broken, she is still quite beautiful. Just a dab of hot glue, and she will be whole again. She will be ready to shine on 2019’s Christmas tree.

The dryer, of course, is another matter entirely. It’s teaching me patience (the lesson that I am given again and again. Someday, I’ll actually be patient). My fiancé has ordered replacement parts to fix the problem, but in the meantime, I have to hang our clean, but wet, laundry on a wooden clothes rack to dry. The drying process is longer, and the product is rather scratchy, but it works.

Let me tell you, when I can use that dryer again, I might just buy some sparkling juice to celebrate!

Finally, my broken tooth. This, was unfortunately, fated to happen. I can’t remember if I ever wrote about the dental evaluation that I had to have, prior to my bone marrow transplant in 2017. The short version: this evaluation resulted in having one tooth pulled and a few others marked as likely to cause future issues.

Well, here we are in the “future”, and a suspect tooth did as was predicted—it broke.

The break didn’t hurt, but unhealthy teeth are gateways for infection. So, Dear Readers, I will be visiting the dentist this morning for an exam. I’m not sure if any work will be done, but I will need to take an antibiotic anyways. PowerPorts—I still have mine—are susceptible to infection from dental work, especially if any plaque is disturbed and makes its way down the port line.

Similar to most people, I do not like having dental work done. The drill, the Novocaine shot…ugh. For me, though, it’s the overhead light that is most bothersome. It is a PTSD trigger. Sometimes, when I am sitting underneath that light, I think I can see other masked faces staring down at me—faces that performed my ICU surgery in 2010. These images bring me back to a time, and a place, wherein I was on Death’s doorstep.

That’s not an exaggeration. I nearly died, and no matter how much time passes, it is something that continues to haunt me.

How do you face a fear like that? I plan to silently recite a verse from the New InternationalVersion of the Holy Bible, specifically, Psalm 91:11a. I’ve written about this verse before. I find a great deal of comfort in these words, so I thought that I’d share them once again: “For He will command His angels concerning you…”.

So, 2019, I see this challenge, and I will view it as Exposure Therapy—which, in the end, will only make me stronger.

Thank you, Dear Readers, for continuing to send love, light and prayers. You give me hope and strength to see the positive in so many situations. Thank you, thank you, thank you.

With the arrival of 2019, my thoughts have gravitated to—and fixated on—the concept of change. The more I have pondered it, the more I realize that there is so much more for me to learn.

For instance, there are different rates of change: sudden and gradual.

Change can occur in the blink of an eye—like an unwanted health diagnosis.

Or, change can happen so gradually, that you never even notice it—until the transformation is complete—like the undercarriage of a car rusting out.

Change, itself, varies. There are different types:

Change of mind

Change of pace

Change of heart.

Most of the monumental changes in my life, have occurred at a super-sonic speed. If given a choice, though, I would prefer the kind of change that requires elbow grease, time, and commitment. The reward for tenacity? Positive developments.

At some point during my cancer relapse in 2017, I developed foot drop. Foot drop affects dorsiflexion—which means it affects the act of walking. The hospital’s in-patient physical therapy department loaned me a plastic Ankle-foot orthosis (also known as an AFO), until I could be fitted for my own leg brace. Before discharge, I was outfitted with one, plastic brace for my weaker, left leg.

Loaner – plastic AFO

I don’t mean to sound ungrateful, but this plastic brace was incredibly uncomfortable. Wearing a brace on only one leg made me feel like my hips were uneven—as if I was wearing a sneaker on one foot and a kitten-heel on the other.

I push through things, though—like a bulldozer. I stopped wearing the brace too early. I stopped using my cane too early.

I didn’t want to admit that I needed assistance…but, eventually, I was able to reconcile with the fact that I did, indeed, need help.

Since April 2018, I have been working with an incredible physical therapist. When I first met her, I couldn’t get up off of the floor without holding onto something and pulling myself up with my arms. Week after week—sometimes two times a week—we met to strengthen my legs and recoup a sense of balance (the tumor in my spinal cord had stolen that, too). In June of 2018, I was fitted for two new braces. Carbon fiber, light-weight, and best of all—one for each foot!

While I can walk without my braces, I usually spend at least half the day wearing them. They support my ankles and make me pick up my feet (which tends to be a problem when you have foot drop).

All of this “elbow grease”, time, and commitment—has led to positive changes. According to my physical therapist, as of January 15, 2019 (my last scheduled appointment), I will be ready to discontinue attending physical therapy sessions.

I will, however, continue doing the at-home exercises on a daily basis. These exercises have contributed so much to my well-being. They’ve given me leg strength, confidence, and restored a sense of balance.

It is this kind of change—the type that requires work—that I prefer.

Thank you, Dear Readers, for joining me here, at Of Perras & Pieridae, in 2019. Please continue to send prayers, light, and love as I taper off of my anti-rejection medication. Your support means the world to me.

When I was younger, I imagined that “New Year’s Eve” consisted of bright lights and glittery decorations.

It also included getting dolled up:

Luna, wearing her red, Christmas collar.

And, of course, you have to make resolutions.

To make resolutions or not? That is the question I’m considering on this last day of 2018.

Are there aspects of my life that I would like to improve upon? Absolutely! Becoming 100% healthy would be wonderful. Building enough leg strength to walk in high heels once again would also be great.

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These goals, however, are easily influenced by outside forces beyond my control. One virus, one bacterial infection, could very easily sabotage my plans to become healthy. One ankle sprain could further weaken my already unstable ankles.

While I can still pursue these goals, they can’t be my only resolutions. The margin for failure is too high. I, for one, become exceedingly melancholy when I can’t fulfill my resolutions. To be successful, I need more than just a statement of “I’m going to do this” or “I’m going to make this happen”.

I need a statement, and then, a plan.

For example, I would like to read more. If this resolution is to be successful, there must be benchmarks. There must be preparation.

Step 1 – Select thin books from my personal collection (this step is based on the premise that shorter books can be read faster. The premise is only true if the books are well-written and focus on an interesting topic).

Step 2 – Aim to read a certain number of books each month (I would start with one—just to avoid failure).

Step 3 – Record progress in a journal or agenda (Accountability is, unfortunately, a necessary evil).

While reading more would be phenomenal exercise for my chemo-scarred brain—and I will give this goal a try—I have larger objectives to pursue. I’m going back to school!

I will be enrolling in two, online courses offered by the Board of Cooperative Educational Services (also known as BOCES). These two courses will form the foundation of my next goal: obtaining a certification in Medical Coding through the American Academy of Professional Coders (AAPC). It appears (knocking very loudly on wood) that I am going to live. And, if I live long enough, I’d like to be able to retire.

This new pursuit doesn’t mean that I will be walking away from writing.

Writing is how I decompress, and process my own feelings. I will continue to post on this blog and to work on pieces of fiction.

So, after writing all of this…I guess I do have resolutions for the coming year!

2019 – moving up, and forward, with the Princess and R2D2 in a hot air balloon. Because, why not?

Thank you, Dear Readers, for sticking with me throughout 2018. Your light, love, and prayers have made an incredible, and positive, impact on my health and my life. I am wishing each of you a wonderful and healthy New Year. Here’s to a fresh start in 2019!

I am going to keep this entry short, as Christmas Eve day is often busy with cooking, cleaning, packing, and/or wrapping the last of the presents. Amid all of the items on your “to-do” list, please remember to breathe.

Remember to stop and listen to your favorite Christmas song.

Maybe keep the Christmas tree lights on for a bit longer, and really see them. Note the colors, the way the ornaments reflect the light. Try to remember the story behind each ornament. Soak it all in.

I know I will, with a giant cup of coffee in my hand.

Merry Christmas to all of you! I am wishing that each and every one of you has a wonderful holiday.

This post is intended for everyone—and anyone—struggling to get through the month of December. That includes me. Yes, I received excellent news at my last transplant check-up in Boston, but life consists of more than just doctor appointments. I, too, need to be reminded of the beauty and the love inherent in this season.

We’ll start with an undecorated Christmas tree:

There’s something about these images that remind me of an Elementary School Christmas Concert that I attended. I had older cousins performing in this particular concert. One of them was in the grade level that performed, “O Tannenbaum”. I look at our tree, and I can’t help but sing the English version of that song.

As previously reported, our tree is a Fraser Fir and is approximately ten-feet tall. How do you decorate such a beast? First, I personally recommend obtaining a tall fiancé. Next, you will need to find a ladder. Put the two together, and you have someone that can hang ornaments on the higher branches.

Placing the tree-topper (which, in our case, is a white star) where it belongs, is a piece of cake for tall people on ladders.

If you are shorter, like me, you get to decorate as high up as you can reach. Working as thus, you’ll eventually meet in the middle and voila! You’ll have a decorated Christmas tree for your fur babies to enjoy from a (safe) distance.

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The tree isn’t the only decoration capable of inspiring holiday cheer. We adorned the fireplace mantel with a faux Amaryllis. It burns a happy shade of scarlet.

We strung lights along our stair hand-rail:

Our house has a second floor, framed in with a wooden banister. In some ways, resembles a balcony, overlooking the first floor. We spruced the banister up with a garland, bows, and ornaments.

In fact, we randomly hung ornaments all around the house (this one is in the kitchen):

The second floor is also where we set up a special, hand-made nativity set. Every time I walk by the crèche and the figurines, I hum either, “Away in a Manger” or “O Little Town of Bethlehem”.

It’s important to remember, though, that the season isn’t just about bright lights, glittery ornaments and greenery. It’s also about love:

It may be difficult to see, but there are two birds in this picture. They are not turtle doves – just common blue jays – but they’re weathering the cold, winter temperatures together. Isn’t that what love is about? Supporting and encouraging each other – even on the coldest and darkest of days?

The season is also about hope for the future:

This little guy fell off of our tree. It’s just a cone for now, but one day, maybe, it’ll be a 10-foot Fraser fir.

Thank you, Dear Readers, for your continued encouragement, light, and love. I am wishing each of you a happy and healthy holiday season.

I apologize for the delay in posting this entry. This past week was insanely busy! I’m sure you’ve felt it, too; how time seems to speed up the closer we get to Christmas. Amid the feeling of being rushed, though, is the potential to create beautiful and joyful memories.

For instance, last Friday, my fiancé and I went to the ICU Christmas party. The party was biker-themed. I wore a mask (because it was a bit crowded and I still need to protect myself from germs). I didn’t want to feel like a patient amid doctors and nurses, so I decorated the mask, biker-style:

The mask came off briefly for pictures with my person, though:

(I stole this photo from my fiancé)

Somehow, the next day, we were able to squeeze in some holiday decorating. Our tree is a Fraser Fir, it’s approximately ten-feet tall, and it smells spectacular! When I look at this tree all aglow, I reflect on holidays past and am excited for the Christmases to come. I don’t often feel joy, but when I see the star on the top of this tree, it takes me back to childhood, when Christmas was pure magic.

(I stole this photo from my fiancé, too)

Decorating was cut short by a follow-up transplant appointment in Boston. The appointment was scheduled for 9:30am on Monday, and, since the trip usually requires 4.5 hours of driving one-way, we decided to book a hotel for Sunday night. I drove the first leg of the journey:

(Again, I stole this photo from my fiancé)

I think I have always admired Boston. I wanted to go to grad school there, but plans change, and that’s okay. The city was incredibly beautiful Sunday night, as we walked to a restaurant for dinner.

(He did an excellent job with this one…so you know what I had to do)

It was quiet enough in the restaurant, that I didn’t have to wear a mask. My only real worry was having hat hair (and my fiancé taking a picture of it):

It’s a welcome change to worry about trivial things, like messed-up hair.

My appointment went extremely well. I am now officially OFF of Prednisone! My lead doctor decided to give my body a chance to adjust to being without steroids before we begin tapering any other medications. Other notable changes include:

I will begin tapering my anti-rejection drug on January 1st, 2019. I will admit to being afraid of this step—afraid that I’ll develop Graft vs. Host Disease without the anti-rejection meds and/or the steroids—but it’s a step that needs to be taken.

It’s a little thing—but I can add honey to my tea again!

Masks are now only required in crowded, public spaces or in doctors’ offices. Quiet restaurants during off hours? No mask. Quiet movie theaters? No mask. Of course, this taste of freedom comes with responsibility—frequent hand-washing and the use of hand-sanitizer are both still required. I must also avoid individuals that are coughing, sneezing or are ill in any way. I also cannot be around individuals have spent time with family, friends, or co-workers that have been ill or recently vaccinated (my fledgling immune system still can’t handle the live viruses used in most vaccines).

It’s a lot to process, but these are enormous strides toward being “normal” again. I don’t expect 2019 to be an easy year, but I do believe it can be a wonderful one.

(This photo is all me – as are the photos of the snowflake ornament and mask)

Thank you, Dear Readers, for taking this journey with me. Your prayers, kind thoughts, and light have carried me through so much. You are appreciated!

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*Please note that the content of this blog is a reflection of the author's personal thoughts and experiences. It is not intended to serve as a self-help guide nor should it in any way, shape, or form replace professional mental health services. If you are in crisis, or in need of support, please reach out to a professional within your community.